‘Is there any point in me doing this?’ Views and experiences of women in the Diabetes and Antenatal Milk Expressing (DAME) trial

Abstract The Diabetes and Antenatal Milk Expressing (DAME) randomised controlled trial (RCT) was conducted in 2011–2015, at six sites in Melbourne, Australia to explore the effect of advising women with diabetes in pregnancy to express breast milk from 36 weeks gestation. Infants whose mothers were randomised to express in pregnancy were more likely to be exclusively breast milk fed during their hospital stay, and there was no evidence of harm. This paper explores women's views and experiences of antenatal expressing. In this two‐arm RCT, 635 women with diabetes in pregnancy who were otherwise of low medical risk were randomised at 36–37 weeks gestation to usual care (not expressing, n = 316), or the intervention, where women were advised to hand express for 10 min twice daily until birth (n = 319). Semistructured face‐to‐face interviews were conducted with 10 women who expressed antenatally. They were asked about their experiences of antenatal expressing, including how they felt about the overall experience, the amount of breast milk they expressed, making time to express, and their experience of breastfeeding. Thematic analysis of the in‐depth interviews identified six themes: (1) learning and adapting expressing, (2) feelings and sensations associated with expressing, (3) support, (4) dis/empowerment, (5) health, and (6) the value of breast milk. Women had both positive and negative experiences of antenatal expressing. If health professionals are advising antenatal expressing to women, it is important they understand the range of outcomes and experiences.


| INTRODUCTION
The World Health Organization (2017) recommends breastfeeding for 6 months exclusively and continued breastfeeding combined with solid foods for up to 2 years or beyond. However, for some women this is more challenging. Women with diabetes in pregnancy-which includes 13% of pregnant women in Australia (Australian Institute for Health and Welfare, 2020)-and their infants are at increased risk of complications during pregnancy and birth (HAPO Study Cooperative Research Group et al., 2008).
These complications can be a barrier to successful breastfeeding (Patil et al., 2020). Women with diabetes in pregnancy are at increased risk of delayed lactogenesis II (De Bortoli & Amir, 2016), are less likely to breastfeed exclusively (Oza-Frank et al., 2016), and have a shorter duration of breastfeeding (Nguyen et al., 2019).
However, for women with gestational diabetes mellitus (GDM), breastfeeding confers significant maternal metabolic benefits and delays the possible onset of type 2 diabetes (Aune et al., 2014).
Infants of women with diabetes in pregnancy have a high risk of hypoglycaemia (Mitanchez et al., 2015), which along with the possible maternal delayed lactogenesis II (De Bortoli & Amir, 2016), leads to mother-infant separation, infant formula supplementation and shorter breastfeeding duration (Baerug et al., 2018). As a result, many pregnant women with diabetes are being advised to express breast milk in the last weeks of pregnancy, to have a supply of expressed breast milk (EBM) to prevent or treat neonatal hypoglycaemia, and avoid infant formula and/or admission of baby to a neonatal unit (NHS Worchestershire Acute Hospitals, 2019; Women's Health Auckland, 2019).
Postnatal expressing is common when women are separated from their babies, when they return to paid employment (Johns et al., 2013), or if babies are unable to feed directly from the breast (Keim et al., 2017). The research on methods of milk expression for lactating women is predominantly breast pump industry-funded and focused on the amount and content of breast milk, and speed and ease of expressing (Becker et al., 2016). A systematic review of the prevalence and outcomes of expressing by Johns et al. (2013) found limited research about women's experience of expressing.
More recently, studies of antenatal expressing in Australia (Brisbane & Giglia, 2015;Casey, Mogg, et al., 2019;Forster et al., 2011), the United Kingdom (Fair et al., 2018), and the United States (Demirci et al., 2019) have included some exploration of women's experiences. Positive experiences include feelings of increased breastfeeding preparedness or confidence, and that having breast milk provided a sense of security or satisfaction (Brisbane & Giglia, 2015;Demirci et al., 2019;Forster et al., 2011).
The Diabetes and Antenatal Milk Expressing (DAME) multisite randomised controlled trial conducted in Melbourne, Australia between 2011 and 2016, tested the practice of advising women with diabetes in pregnancy, who were otherwise of low obstetric risk, to express in pregnancy. While all 635 participants had routine antenatal care, following randomisation, half of the women were verbally guided how to express breastmilk by the research midwives at the hospitals. They were advised to hand express twice a day for no more than 10 min each time and given written instructions about expressing and breastmilk storage as per Supporting Information File 1 of the trial protocol paper (Forster et al., 2014). Infants whose mothers were randomised to express in pregnancy were more likely to be exclusively breast milk fed during their hospital stay, and there was no evidence of harm. Women in the intervention arm expressed a median of 20 times (range: 1-59 times), with the median total volume expressed 5.5 ml (range: 0-905 ml), and almost a quarter of women expressed less than 1 ml in total (Forster et al., 2017).
In follow-up surveys of all participants the DAME trial at 2 and 12 weeks after birth, many women commented on the low volumes of breast milk they had been able to express. Given their comments, the low median volumes identified, and that perceived insufficient milk supply remains one of the most common reasons cited for ceasing breastfeeding (Hauck et al., 2011), it is important to explore women's experiences of antenatal expressing, including their views of the volume of milk expressed. The purpose of this study was to understand the views and experiences of antenatal milk expressing for a sample of women in the intervention arm of the DAME trial.

Key messages
• Women's experiences of antenatal expressing were both positive and negative; it is important to understand the range of experiences.
• Women should be advised that some women express little or no breast milk antenatally and therefore be reassured if they are concerned.
• For women with diabetes in pregnancy, their diabetes management is a significant time burden, and should be considered when discussing antenatal expressing with women.
• Maternity care providers need to follow-up with pregnant women advised to express, to provide education, reassurance, and reassess expressing techniques.
• Maternity care providers need to manage and prioritise the use of expressed breast milk.

| Study design
A qualitative descriptive study was undertaken. Our aim was to describe a broad range of experiences and to stay close to the words and meaning of the women (Sandelowski, 2000).
To account for diversity, and to maximise the richness of data about participants' views and experiences, we used purposive sampling (Sandelowski, 2000). We considered women's diabetes type (either pre-existing or pregnancy induced), parity (first baby or not), and volume of breast milk expressed (either higher or lower than 5.5 ml in total). Informed by these criteria, 15 of the most recent participants from two of the largest study sites, were telephoned and invited to participate in an in-depth interview about their experience in the trial. Ten women consented to participate.

A semistructured interview guide was developed, informed
by open-ended responses to telephone surveys of participants in the trial. The guide was piloted with researchers who were experienced with in-depth interviews and/or breastfeeding research. Feedback was incorporated, and the guide piloted for understanding and acceptability with a mother known to have recently expressed antenatally. The guide was used to explore participants' overall experience of antenatal expressing, but also included prompt questions about specific aspects of expressing.
Women were also encouraged to discuss any aspect of antenatal expressing important to them. Being an iterative process, two questions were added after the first three interviews-one about using a breast pump antenatally, and one exploring participants' impressions of what their family or friends thought about their expressing (Table 1).

| Data collection
Interviews were conducted between March and December 2017, at which time the women's babies were between 17 and 47 months of age (median 24 months). A plain language statement and consent form were emailed to women and a consent form signed before interview. Participants were interviewed face-to-face at a time and place suitable for them, such as their home, shopping centre or workplace. One interview was conducted by video conference. All interviews were conducted by the lead author. The research team reviewed the data after the third and ninth interviews. No new ideas were elicited from the tenth participant, so we did not seek further women to interview. All interviews were audio recorded, transcribed verbatim and field notes were taken by the researcher at the time of interview. The average length of interview was 36 min (range: 19-53 min).

| Analysis
Thematic analysis was conducted to identify, analyse, and generate themes from the data (Attride-Stirling, 2001;Sandelowski, 2000). The process of inductive coding was used, to stay close to intent of the thoughts and words of the participants (Braun & Clarke, 2006;Saldana, 2016). All transcripts were read and checked against the audio files and reread for understanding and immersion in the data. Initially, three transcripts were independently coded by authors A.M., L.A. and S.C. The use of direct quotes used in each theme are verbatim, with the emphasis and sentence structure reflecting participants' voices.
To protect the confidentiality and anonymity of the participants each woman was assigned a number (e.g., P1).

Key domains
General experience of expressing antenatally-including process, instructions, equipment Making the time to express What was noticed while expressing for mother and baby/foetussensations, contractions How women felt about the amount of breast milk that was able to be expressed antenatally-importance, volumes The impact of expressing antenatally on the postnatal experienceconfidence, feeding, expressing Whether participating in the trial made a difference for women and their babies postnatally-blood glucose management, formula use

Thoughts of partner/family members about antenatal expressing
Other thoughts-intention to express antenatally again, aspects of expressing to change, advice to researchers MOORHEAD ET AL. | 3 of 12 3 | RESULTS Ten women participated in an interview. Their characteristics are presented in Table 2.
Analysis of the in-depth interviews identified six themes: (1) learning and adapting expressing, (2) feelings and sensations associated with expressing, (3) support, (4) dis/empowerment, (5) health, and (6) the value of breast milk. The themes, categories and codes are provided in Table 3.

| Learning and adapting antenatal expressing
Five categories were identified under the theme of learning and adapting antenatal expressing: the expressing process, time for expressing, expressing technique, labour onset and expressing, and the possibility of using a breast pump.

| Expressing process
Most participants did not know about antenatal expressing before the study and needed an explanation about how expressing milk antenatally 'worked', and how to express and store breast milk. The women felt informed and reassured by this information.
Physically it was nice to be able to have the lactation con- Participant identifier codes: P = participant number; GDM = gestational diabetes (diet controlled), GDM-in = gestational diabetes (required insulin), T1 = Type 1 diabetes, T2 = Type 2 diabetes; low = total volume expressed was lower than the median volume expressed in the DAME trial (5.5 ml), high = total volume expressed was higher than the median volume expressed in the DAME trial (5.5 ml).
MOORHEAD ET AL.

| Support
The theme of support has four categories: appreciating family support, wanting health professional support, needing professional follow-up about their expressing technique, and expressing as a potential source of conflict.

| Family support
The women appreciated the physical and emotional support of their partners and/or close family.

| Disappointment
While care was taken to inform women that expressing little or no milk antenatally is probably normal, some women with low or no milk described feeling stressed and disappointed, and a sense that their bodies had not functioned as they had hoped.
It's not really disappointing but kind of. Sometimes I feel a bit low that I can't express. [P8,low]

| Motivation
For some women, the anticipation of breastfeeding problems or the ability to express milk was motivation to continue expressing. However, others felt expressing was futile when they were unable to express any milk.

| Health
The theme of health has four categories: foetal and baby health, maternal health, diabetes, and worry and stress for the women.

| Foetal and baby health
Participants described general concern for their babies but particularly their fears of macrosomia, neonatal hypoglycaemia, separation from their infant, and breastfeeding difficulties.

| Maternal health
The women's own health, especially their diabetes, became a major focus during their pregnancy. Advice from some health professionals made women feel uncomfortable and guilty for having diabetes, especially if a woman was above her ideal weight. Women felt a responsibility to be a 'good' mother by caring for their own health and by doing so, the health of their foetus and baby.
About the blood sugars and the babythe risk to the baby. Like "you have gestational diabetes. You are a risk.

| Milk volumes
Women were aware of the possibility of postpartum problems associated with maternal diabetes such as low milk production and low infant blood glucose levels, so a store of breast milk was considered as security. Yet some wondered if their small amounts of breast milk would be enough.

| DISCUSSION
This study, which explored the views and experiences of antenatal expressing for women with diabetes in pregnancy, has confirmed similar themes in previous studies and identified new themes. Consistent with previous studies we found that antenatal expressing gave some women feelings of confidence, achievement, and empowerment (Brisbane & Giglia, 2015;Casey, Mogg, et al., 2019;Demirci et al., 2019) but that expressing at times felt uncomfortable, painful (Demirci et al., 2019) and embarrassing (Brisbane & Giglia, 2015;Demirci et al., 2019). Also consistent with earlier studies, women wanting to avoid infant formula, saw their milk as precious and security for their baby's health, and that by expressing milk they were being a good and protective mother (Casey, Mogg, et al., 2019).
Similar to findings by Casey, Mogg, et al. (2019), and Brisbane and Giglia (2015), women in this study described feelings of frustration, disappointment, and futility if their breast milk was not used, or hospital staff did not value their precious breast milk as much as they did. Some women wondered if antenatal expressing was worth their efforts.
Difficulty in finding time to express was commonly mentioned in the routine follow-up in the DAME trial and by Demirci et al. (2019), so was included in the interview guide. Some of the participants had expressed antenatally again since the trial and described finding time to express was more difficult now that they were caring for other children and said they 'did it when they could'.
Due to increased pregnancy monitoring for women with diabetes, some participants described a loss of control and that managing their diabetes felt burdensome. Yet for some, the addition of twice-daily expressing did not increase their overall feelings of burden. Antenatal expressing created some positive feelings. Some women felt that expressing gave them a level of control in their pregnancy, in that they might be able to produce a store of breast milk for their baby and hoped that antenatal expressing might improve their approaching breastfeeding experience.
For some women, including their partner in the expressing experience was positive, with their partners encouraging them, helping with equipment and hands-on expressing. However, others described conflict when other family members questioned their antenatal expressing. As with the evidence to support breastfeeding overall (McFadden et al., 2017), the inclusion of partners or support people when teaching antenatal expressing may support women and reduce familial conflict.
Our study further confirmed that women wanted support from health professionals at the time of initial expressing education and at subsequent antenatal appointments. Given that they had only had one supervised expressing session, they wanted to know if they were Some of the themes may have been also identified by participants in the control arm-especially relating to the values of importance of breast milk, concern about breastfeeding in general, and the burden of diabetes. While diabetes in pregnancy was not the focus of this study, the women's diabetes management had a significant day-to-day impact and was often woven into participants' responses about expressing. Also, the interviews were conducted approximately 3 years after the women had participated in the trial, however research has confirmed that women's memory of infant feeding is accurate up to at least 6 years postpartum (Amissah et al., 2017). A strength of this study is that women who have diabetes in pregnancy are currently a target group to be advised to express antenatally and these in-depth interviews have provided valuable insights into their lives, views, and experiences. This is the first study describing the views and experiences of women expressing antenatally with the researchers knowing the volumes of antenatal breast milk. Currently there is no evidence that antenatal expressing promotes increased postnatal volumes of breast milk. A perceived lack of a sufficient milk supply is often the main reason cited by women for ceasing breastfeeding earlier than their intended goals (Morrison et al., 2015), so health professionals should be alert to women being concerned if they express little or no milk and be ready to reassure them.
While research is emerging about antenatal expressing, other evidence-based breastfeeding interventions must be maintained, such as the global initiative of the BFHI Ten Steps to Successful Breastfeeding (World Health Organization, 2017), particularly the need for health professionals to discuss the importance and management of breastfeeding with pregnant women and their families. This will ensure the intervention of antenatal expressing complements, but does not overshadow established best practices that protect, promote, and support breastfeeding.

DATA AVAILABILITY STATEMENT
The data that support the findings of this study are available on request from the corresponding author. The data are not publicly available due to privacy and ethical restrictions.